Pink Journey
Warning: At the end of this post, there are pictures. You might not want to see them, it gets ugly.
It was typical for me to wait 2 years between mammograms. My cousin just had a scare with needing a biopsy about 7 months prior. I remember telling her, with the intentions of calming her anxiety, "Most people who have a biopsy, it comes back benign." It did for her, though she has to go back every 6 months for a mammogram now.
Dr. Wax's office called me after my annual (2 year for me) mammogram, "The radiologist recommends a diagnostic mammogram. It says here that there are calcium spots. That's typical, it's probably nothing." My husband and my mom went with me for the diagnostic mammogram. They were in the waiting room, where the nurse told them, "Aleta doesn't need an ultrasound. That's good. God forbid she needs a biopsy." I wouldn't wish a diagnostic mammogram on any woman, imagine the routine pressure times ten. I had bruises from the process.
The radiologist talked with me right after the diagnostic mammogram. He said it was 50/50; he had to recommend a biopsy. He followed that up with, "If it is cancer, this is how we want to catch it. Early." I cried. I just wanted to know. Tell me I have cancer or tell me I don't. Why so many test! When I walked to the waiting room, my husband and mom couldn't understand why I was crying. We sat down with the admin lady. She said, "95 percent of biopsies come back negative." My husband latched on to that percentage - see, nothing to worry about." I shared what the actual radiologist said, but people need to hold on to their own source of hope. I didn't see hope in the radiologist's eyes.
We visited with Greg's family not long after and his sisters both agreed, "It's probably nothing." My words to my cousin haunted me. Was this how she felt? Those "probably nothing" words did zero to offer comfort. Did she have a radiologist say 50/50 and then I treated her with such disdain? Did people not understand the fear or this was the best way to handle a situation of fear? I wasn't sure. But I sure know better now.
Biopsy day came... Between each of these things, diagnostic mammogram, results, biopsy, results - we are talking weeks of waiting. I went in for my biopsy. The breast center waiting room was divided into two chairs per section. Sobs were heard throughout. I sat where I was alone and tried to tone out the tears of surrounding women.
The biopsy itself was excruciating and interesting. I didn't cry, not even a snivel. I was determined to be strong. Make no mistake, it was hell, the worst yet to go through. I sat in a chair, with two pillows behind me, in order to support my breast being locked in a mammogram machine for over an hour. Remember the diagnostic mammogram pressure, yeah that pressure for an hour. The radiologist instructed me to turn my head away for the entire time. She was accompanied with another doctor who was in training for the department. This allowed me to listen as she shared what she was doing.
I did see the tool they used. It's long, like a pencil case, but wide. Yes, a needle administered numbing medicine, as the needle went deeper and deeper into the breast tissue, but the needle itself burned. Then the horrible sound started, it was the drilling sound you hear at the dentists office. It would stop and start for each piece of flesh she ripped out of me... 7 in total. That's the interesting part. She showed me the pieces of jellyfish looking flesh in the container. The radiologist was very pleased with herself that each of the 7 pieces had a specimen of the "calcium appearance" for testing. I asked her, "Did you get all of it?" She looked at me, "Oh, honey, I'd have to take your entire breast to do that."
This is when I paid more attention to the two mammograms on the screen. The right breast, the one that was clear, was truly clear. The left breast mammogram looked like salt was sprinkled throughout the entire breast. (Jumping ahead here... The oncologist later told me that those salt looking pieces are precancerous cells!)
I was proud of myself for not shedding a tear. I was glad it was over. I smiled when I met back up with my husband and mom. "It's over," I thought. Relief to have survived that. But the burning pain didn't end... It lasted all the way through going to Disney. Before going on that trip, I told my mom, "I have a bad feeling about the biopsy results." I've shared this with other women and the common response is, "I've heard a lot of people know, before they are told. Our bodies are trying to prepare the mind."
I was at work when I received the nurse's call, "I'm sorry. It's cancer. We have to schedule an appointment with a surgeon. Do you have a preference from this list of surgeons?" I didn't know who to pick, "Who would you recommend?" The nurse said, "Let me see who is available the soonest." Did she really do that or did she pick the best surgeon without making it known? I'll never know, but I'm grateful for her clarity when my mind was numb. The words racing through my mind were "no, no, no, no, no" in response to knowing I had cancer. I tried to call my family, but I couldn't make the words come out. I don't know how I managed a text message, "I have breast cancer."
My husband immediately responded that we needed a second opinion. My parents said they were sad. My boss sent me home. When I got home, the tears didn't stop. My husband was in bed, looking at a video online. He said, "Come look at this video." I looked at him in shock, "That's what you say to me after finding out I have cancer?" He said, "It might not be that. We will talk to the doctor first." I was floored, "The doctor is a surgeon! I am going to have surgery, otherwise he wouldn't waste his time to schedule an appointment." My husband said I was being fatalistic.
When my parents arrived at our home, I was on the computer, researching. Emotions were all over the place between me, my husband and parents. Cancer is not family friendly. I went back and forth on if I should share on Facebook. Was it appropriate? My husband always says I share too much on Facebook, but each person is different. I'm so glad I made my decision to do so. It took me 10 minutes just to find the simple words, "I have breast cancer" to type and share.
It was because of Facebook that a community of friends came in waves of support. The kindness and prayers were heart-warming and much needed. One huge blessing was the room mother in Gregory's class saw my post and asked who my surgeon was.... Turns out he is her brother-in-law! I asked her if she thought he could answer some questions. I had an appointment with him the following week, but would drive myself crazy with questions over the weekend. The room mother was so sweet! She was able to give me the surgeon's personal email. Yes, he emailed me back, answering as many questions as he could. Between his answers and friends reading my pathology (or "path" as it's called) report, I had a better understanding of my cancer.
Each cancer is different. Mine looked to be small. My GYN even called to say that she reviewed her exam notes from my most recent appointment , "I didn't feel anything when we did the breast exam. I looked at the mammogram and it was not an easy call for the radiologist. Someone up there is really looking out for you." (My cousin, Andy, had passed away not long before I found out I had cancer. I think Andy was looking out for me, talking to God.)
My cancer was estrogen and progesterone positive. This means it was fed by my hormones. My GYN also called to make sure I wasn't taking the progesterone pills. Thank God I did not start those pills yet. Something kept telling me not to take them, you know that "gut feeling" but I think it was God. Otherwise, I could have fed the progesterone straight to the cancer. I didn't find out my HER2 results - it was inconclusive so samples were sent out for more testing. Which then came back that it couldn't be determined with more testing, because the sample left over after the est/progesterone tests was too small. HER2 tells you how quickly the cancer will grow. My cancer was grade 1. There's a difference between grade and stage. The cancer isn't give a stage until after it is removed. (After surgery I found out my cancer was invasive.)
The doctor offered me two choices: lumpectomy or mastectomy. Not having surgery was not an option. With lumpectomy it only takes out a section and multiple radiation treatments would be needed. Mastectomy is a complete removal of the breast tissue, leaving a concave result (it looks like an inverted volcano, it's not flat).
A good friend of mine worked at the breast center in New Orleans. She looked at my path report and said, "You might want to consider a double mastectomy with DEIP flap reconstruction." What?! Take BOTH breasts? "Because you don't want to go through this again and reconstruction on both will be more even," she explained.
What the heck is DEIP flap? Where stomach veins and fat are used to reconnect with what's left of the breast skin. The reconstruction doctors are micro doctors - they reconnect the tiny veins in order to get blood flow going to the newly constructed breasts. It sounded like a SciFi movie. My friend spoke with me numerous times, one to one, with detail, then she came over to answer questions that my family had... She was a big help in educating everyone without the questions wearing me down.
When I mentioned this option to Dr. Corsetti, he gave me recommendations for this very difficult 10 hour surgery. Dr. Walter and Dr. Khobehi are my reconstruction doctors.
I'm going to take a moment to talk about people responding to cancer news:
"This is going to be hard. You're going to need help. You're going to have to move and you're not going to want to. If you don't, I'm going to come over and kick your butt."
"You're going to have new boobs and a tummy tuck! You're going to be a hot momma!" (I can't tell you how much the breast cancer women hate that quote.... It's cancer, not boob job and tummy tuck. I can tell you this, after the first surgery, I looked like a monster and I still had my upper and middle stomach, making me very oddly and horribly shaped. Nothing hot about it.)
"You've got this. It's nothing." Nothing? This is a 10 hour surgery! I was afraid I wouldn't wake up from it. This is a common fear in the breast cancer community, by the way.
"I'm sorry. I don't know what to say in this type of situation." It's honest. I'm bad in these situations too.
I'm not critiquing what is said, because as I just wrote, I'm not good with what to say either. I'd be better now, if it's specifically breast cancer and the person wants to know what I went through. But what I went through isn't what someone else will go through. There's always someone who had a great recovery; there's always someone who had even more complications than I had...
We all respond differently to coping.... I needed information. It helped me to feel as though I took the control away from cancer. My parents cried and tried not to show it around me, but I saw the fear in their eyes. If my son was having surgery, I'd be a mess too. My husband, well, he felt anger. He would get mad at me for small things. I thought to myself, "I have to be calm for both of us." He did eventually share, "I don't know how to fix this. That's what I do, I fix things. You and Gregory are my world. I feel helpless with you having cancer." I respected him for saying this and really needed to hear those words. He needed to say them too, but only when he was ready. If the roles were reversed, I know I'd want to try to fix things too as much as I could.
The best I can offer is that if you have breast cancer, don't take what people say to heart. People really don't know how to respond that best fit your needs. People try their best and those that care might not know how to be supportive in the way you need.
Best thing I did for me was to join an online community. I read a lot, before posting. I then found an online support group that went through the DMX/DEIP Double Mastectomy and DEIP on the same day. This was huge for me. The women shared their stories and pictures. I found out about necrosis. I read about bacterial infections that start of red and small and spread fast and can lead to weeks in the hospital, possible death. I heard about seromas, pockets of fluid and "swelly belly." Education and support - it was great, terrifying but great. The ladies shared what to bring to the hospital, what to have at home to best heal, etc.
At the hospital, you don't need a lot - iPhone and charger with an extension chord, go home outfit. The hospital provides deodorant, toothbrush and paste. Oh and bring shampoo, towel, brush. I was allowed one shower at the hospital, but they didn't have shampoo and only a small towel. If someone can be with you at the hospital to help you get out of bed and walk with you, that's a huge plus. If you wait for a nurse, it will take a while. At home, a shower chair is a must. A lift chair helped immensely for the first 3 weeks. Having food prepared and a grabby stick to pick up stuff from the ground help too. More about recovery later.
Your family and friends might offer to help, please take them up on it. It helps them. People want to be helpful! Having meals prepared helps. Having someone come over to do things around the house helps! Having someone make plans to bring your son to events helps! Plan as much as you can with friends and family, because when you get home, your mind will be muddy and your body will feel weakness like you have never experienced before. I was incredibly lucky to have a great support group with family and friends.
Before surgery I had to get a stomach scan, to make sure I didn't have any damage to the nerves from the c-section six years ago. The stomach scan was a first for me. Don't wear pants with metal, zippers, etc. It wasn't painful at all, just a lot of noise and being in a massive machine that bellowed when to breath and when to hold your breath. Of course there was the standard blood work requirements. Plus I did the BRCA gene test, which looks for the cancer gene. Funny how I had cancer, but the BRCA gene test came back negative!
I found out I had cancer a week before my birthday, which is on Oct 28th. I remember my husband saying, "It's October, celebrating breast cancer awareness and you have it." It was a weird feeling; we laughed. My husband wanted to offer me comfort and found a way to do so. He found some pink ribbon and pink board. He carved out the pink ribbon awareness symbol. Then he wrapped all four trees in our yard with pink ribbon and the symbol. Every time I went outside I saw the pink decorations and smiled. He told me, "Every time you see the pink ribbon, it will remind you of how much you are loved."
My brother, his wife and their son came in town for my birthday. When I saw my sister-in-law, she hugged me so tightly. I needed that. She was so sweet and thoughtful. My brother had tears in his eyes. My parents took our families (and close friend, Kim and her husband) out to eat at a fancy restaurant to celebrate my 50th birthday. It sounds strange to celebrate when such a doom and gloom cancer hung in the clouds. But it was a good thing to do. Having happy times helped to lift the spirits. Cancer did not control everything! I told my mom, "We celebrated 3 big birthdays. I turned 50, Kim turned 50 and my mom turned 75."
With the surgeons approval, my surgery was scheduled after our return from the Disney trip. At one point I thought, "I don't care about Disney! If the doctor says the cancer has to come out now, then it's now and Disney can be rescheduled." The doctor approved waiting, but I wasn't keen on it. That said, looking back, I can say it was the right thing for me.
You can't be consumed with cancer when you are in Disney and it's your son's first time going to Disney. Normally I don't go on rides. I don't like them. This time though, I went on all of them except for four rides. (One of the rides I went on in the past, the water ride - I just didn't want to get wet again.). I was proud of myself for cutting loose and riding the roller coaster rides! Cancer might have given me courage. If not now, what if it was the only time I could.... I didn't want to pass up opportunities to create memories with my family.
From Disney to billing at work.... To being sick! Oh my gosh, I came down with a miserable cold the week of the surgery. I thought for sure the doctor would push back the surgery. No, not the case. Then I had a heat rash on my stomach right where the scar was on the c-section and where the doctors would cut open again. Would they cancel the surgery with the cold and heat rash? No. I was coughing at night and not sleeping much from fear and being sick.
The morning of the surgery, we had to be at the hospital for 5am. Surgery time was 7am. My parents brought Gregory to school that morning and then came to the hospital. Greg was with me until it was time to go. Father AJ was at the hospital and prayed with us. I was taken away and brought into a large room with sections of people getting prepared for surgery. The curtains closed around me. The anesthesiologist doctor said I didn't have good veins. He had to use the one on my wrist. (The needle remained in my arm even after it was disconnected, because if there was an emergency, the nurses wouldn't have to rush to find a vein.).
Dr. Walters came in and made his "markings" on my body. He listened on a machine. I could hear the blood flow from the small ultrasound as he followed and outlined the nerves on my stomach. It was a roadmap. I remember the nurse saying my lips were very dry and putting something on them. I remember being rolled into the surgery room. It was large, bright and white and there were a lot of people there. I knew Dr. Corsetti would remove both breasts, which would take approximately 4 hours. I knew Dr. Walters and Dr. Khoobehi would work together to remove lower stomach skin, nerve and fat and reconnect to the empty breast skin, which would take approximately 4 hours.
The surgery lasted 10 hours total. When I woke up, I was in the ICU unit. My husband and parents were there. I'm pretty sure the doctor came in early on too. I vaguely remember him saying, "Make sure she knows the extra skin is there to help with the blood flow." Mom told me, "The doctor did the best that he could." Greg said, "They got all of the cancer."
I couldn't see myself. I had bandages and wires on me all over the place. I was loopy from the medicine, but thankfully the patch behind my ear helped me not get nauseated. My mind was happy. That's the best I can explain. My body had a great 10 hour sleep, after a week of being sick. I was given a liquid lunch to make sure my stomach could handle it. That afternoon I was given solid food and sitting in a chair. Dr. Walters said I was doing great, "Most people aren't up the first day. You are a day ahead of what most patients are like." His words lifted my spirits even more!
My pee eventually changed from smurf blue to green to normal yellow. During the surgery, the doctor injected my breasts with a dye. It shows them where the lymph nodes are closets to the breast tissue. The lymph nodes were removed and tested for cancer. All 9 nodes came back negative. Good news!
The nurses in the ICU unit were very nice. Even though children were not allowed in the ICU unit, immediately after I woke up, they allowed my six year old son to come into the room. I tried to reassure him; he looked so scared. (I had a very busy weekend planned for him, to keep his mind off of mommy being in the hospital. My parents, husband and friends took him to the various kids' events.).
The ICU nurses were able to move me in and out of the bed. When it was time to lay down, they had to move me up, by grabbing the sheet under me (I crossed my arms as if to hug myself and lifted my head), then they lifted the sheet and moved me up. It wasn't easy for them, so either I was in the bed or in the chair for a while. The second day was harder... The nurses have to check that the "flap" from the stomach, which was now on the breasts was still alive. They used a small ultrasound device to hear the blood flow. This was done every hour on the hour... Every hour on the hour, even at night.
The second day, the lack of sleep was wearing down on me. The flaps were now being checked every two hours. The next day I was moved to a regular room. I was able to get more sleep, but had less nurse availability. So when I called to ask for someone to help me get up to walk, it was hours later and sometimes only after I asked a second time. I hated to bother them, but I knew I needed to walk. Walking helped to get the blood flow, which was needed for the flaps to survive.
It was in the regular hospital room that I asked a nurse to take a picture of my breasts. How horrifying! The picture sent me into a depression. I looked awful. I'm not talking about bruises, I expected that. I'm talking about lumps that didn't even resemble breasts.
The pain was controlled, but not the emotions. I looked like a monster. When I saw the doctor, he explained that he could have been my hero and made everything look right but that took the chance of loosing everything, including the flap. (If that happened, the entire breasts and all of his work, would be removed and plastic shells inserted for a future try again surgery. Thankfully the flaps survived.). Because I was naturally large breasted, the veins are stretched thin. He did what he did in order to preserve the blood flow. I knew it made sense to me when he said it, but I wasn't ready to hear it.
All I could do was think about how hideous I looked. I didn't believe him when he said the second surgery would fix things. Everyone kept saying, "You are cancer free." Yes, that's good, but when you look like a monster, it's hard to find happiness. Plus I still didn't know if chemo or radiation was needed, what was the pathology report results.... We had to wait.
(The final path report came back, about 2 weeks of waiting after the surgery. The oncologist said, "I don't normally get to tell people this, but you don't need radiation or chemotherapy." There was a pill that he could recommend and not recommend. Because I still had cycles, my body is still producing estrogen and progesterone, but I don't have that much breast tissue still left (just where the chest cavity is, because the doctor can never remove all of it). However, the pill to stop your body from producing those hormones can cause another type of cancer. No thank you. The oncologist said I had about 97 percent change of never getting breast cancer again, the pill would up that to 97 1/2, that's all. Again, no thank you.)
I was a waiting monster. After surgery, I was sent home with four tubes coming out of my body. At the end of each tube was a bulb, or as the cancer community calls it the "grenade". The tubes were in place to drain the body of excess fluids. The grenade measured what was coming out. The measurements need to be recorded. But here's the thing, the grenades need to be compressed and closed in order to work. But two of them, the stomach ones wouldn't close even after pressing them hard and closing the lid at the top. Not much was coming out of the stomach area. It was gross to empty the grenades as well. Sometimes it was red, sometimes yellow, sometimes little pieces of something would come out. Eww.
When Bonnie and Greg's parents came over, I shared... when I went to the bathroom, I felt like a bubble was moving up and down in my stomach. I felt it move. I heard it move! I didn't think anything of it though, other than it was weird. My entire body felt weird, so I didn't know if it was wrong. I just thought it might be a side affect from being cut hip to hip and feeling like half of my body was going to come off at any moment. Bonnie said, "Don't you think you should tell your doctor?" I didn't. I should have followed her advise!
Again, pain was manageable. But... It hurt to sit. It hurt to stand. It hurt to lay down. It hurt to walk. It hurt. All the time. Everything hurt - arms, breasts, back, stomach, belly button (mine was removed and another was cut) hips and legs hurt and .... My tailbone hurt! I think it hurt because of the length of time on the operating table. I don't remember a lot about the first week, other than being in a fog and trying to move and trying not to move at the same time.
The second week the drains were removed. It was progress! But I still looked like a monster and I was more aware that my right breast had healing issues. The last day at the hospital, I remember Dr. Walters telling my husband that the purple sections of my right breast skin were like a burn victim. The skin would blister, the blister would break and a scab would form. Let's call it like it is - necrosis, dead skin.
However, though I remember it being said, again, it wasn't registering - "monster" was on the mind. At home, my husband washed my body. I couldn't reach around and was scared to wash around the tubes and couldn't see my breasts and stomach areas to know if I was washing it correctly.... And it grossed me out. I was thankful for the fogged up mirrors from the steam in the bathroom so I didn't have to see my body. I cried tears of relief and sadness when my husband lovingly and every so gently washed my body and said sweet things to me. He was really there for me in my darkest moments.
The dead skin did as the doctor said - two huge horrible blisters formed - one on the side and one under the breast. Greg wanted to take pictures, to see how it was progressing, but I refused to let him in the beginning. I couldn't stomach the idea of pictures of this body being anywhere.
My surgery was on Friday, December 13th. On New Years' eve, my side started to leak on the right. It leaked where the tube had been removed. It didn't just leak a little. It was leaking to the point that I had to wear those large pee pads across my side so I didn't leak all over myself, cloths and furniture. On New Year's Day, it kept leaking to the same crazy extent. I sent a text message to Dr. Walters. He told me to come to the office the very next day. My parents and Greg's parents were at our home for the New Year's Day lunch. Mom asked how I felt. "Drained." But I wasn't.
Dr. Walters said it was a seroma. (This is probably the "bubble" feeling I had from early on.). He said I would need to get the drain put back in. Greg was with me in the room. The doctor said, "This will pinch." I was holding Greg's hand. Pinch? I'm surprised I didn't break Greg's fingers! I felt the pushing as the tube went in, I felt the stitches stinging, I heard the nurse ask if the doctor needed gauze and the doctor replied he needed "towels" instead. I felt my body shaking the entire time and squeezing my eyes shut.
My husband saw and heard it all. He said, "I kept looking at the sink, wondering why the nurse left the faucet running. When she moved, I realized the sink was never on... That constant flow of water was coming from your body! Where the doctor was working on you, fluid was just pouring out!" When I stood up to get dressed, my husband took my hand and insisted, "You have to see this!" He showed me the large pool of water on the floor, along with the towels. "If I hadn't been there, I wouldn't have believed it!" He was in such shock that he repeated his words.
The nurse didn't put a pad on the tube. We walked out with the drain and bulb. I felt as though my body had taken three steps back in recovery. On the drive home, my husband wanted to stop at the grocery store for bread. I waited in the car while he quickly went in for the purchase. I had to fight with the blasted grenade. It kept wanting to open and not keep the suction. (I was determined it would work - I battled that grenade and by the end of the evening, it was finally keeping suction.). When my husband drove us home, I felt my side and knew I was leaking still. As we walked into the house, I told Greg and he went back to his car... To find a puddle of fluid on my car seat. Like I said.... The grenade didn't work right away.
It's hard to feel normal with tubes coming out of you. It changes how you dress, shower, even go to the bathroom. If you turn or move in a certain way, the pain from the tubes will shoot right through you. Couple this tube pain to a body still at its weakest.
When I say weak, I mean the kind of weakness where you can't hold a pen to write! That surprised me and angered me. I wasn't expecting to have such limitations. I knew I couldn't lift my hands over my head. I knew I would need someone to help me wash my hair, because of that limitation. I knew I wouldn't be able to lift anything over five pounds. I had heard the walking would be painful, but even knowing it's nothing in comparison to the actual pain of moving. But the weakness of your fingers to hold things, no I wasn't prepared for that.
I had to ask for help to get up and down, to get in and out of the car. I had to be moved in a wheel chair to go to my son's first voice recital. I'm so grateful to have attended. I cried when he sang. The first time I went to the grocery store, I was happy to do so and fortunate my parents were with me. Putting something into a basket is easy. Reaching down to put it on the belt and then put the bags in the car and being more tired than you realize.... Well, I needed help, even when I thought I was getting better.
I really understood why my 93 year old independent grandmother would get hostile having people help her. It's frustrating, worse when you are 50 and feeling like an invalid, a prisoner to your body. This is the kind of weakness I'm talking about. I have a much better empathy for older people going through such weakness.
Let's talk about depression. It cloaked me. Ever since the day I saw the picture of my breasts in the hospital. Monster Me. I remember going to the online group and seeing pictures of ladies after their first surgery and how beautiful they looked. I couldn't even reach out. I did post the picture of me from the surgery and received responses like, "Get a new doctor now!"
The necrosis was a long... Long.... LONG healing process. The doctor told me at one appointment, "We can take the extra skin I left that is to the side of your breast (under my armpit) and remove the necrosis and use the left over skin to cover the breast. However, there is a risk of infection." This would require another surgery and I already knew I'd have a second one. I didn't want a third surgery. I told the doctor I would keep working on the necrosis.
What did that mean, working on the necrosis? My husband helped with that. As the necrosis blister broke, it formed a hard scab. My husband put neosporin on the scab twice a day. I was so grossed out with it. Each doctor visit (and there were many), the doctor did "debridement" of the necrosis. He used what looked like tweezers and scissors and would pull at the edges of the necrosis scab. Each time he would "chip away" at the massive scab.
This was a slow process. At one point, the doctor said, "This is good. The skin under it looks good." Eventually he pulled a large piece of scab off, the last part of it. My new patient responsibility was to do a wet to dry dressing twice a day. This wet to dry dressing had to be done on two different parts of the right breasts and also for the belly button. (Did I mention there was necrosis in the belly button?). Basically the necrosis left "holes" in the skin and my body had to heal from the inside out. These holes leaked blood.
The process of wet to dry consisted of wetting gauze with saline solution water. So, I had three sections to do this for, then get three dry gauze pads to cover the wet gauze. The wet gauze for each part had to be pushed into the hole as much as possible. Yes, I felt this, yes it was painful.
It was at this time that my husband said, "You need to do this now. You need to face yourself." I'll admit, the first time I did the wet to dry dressing, I cried, the sobbing kind. Monster Me. I did it though. I took care of myself. Let me tell you though, there was a time when I wondered if I would ever heal. The right breast was so deformed, tucked down and to the side. The dead skin just made it more ghastly. Not healing made me frustrated.
Things would happen like.... Okay, I got one wet gauze ready and in place, so I'd reach over to get another gauze ready and the first one falls to the floor and suddenly I have blood pouring out of both areas, blood running down my stomach and on to my pants. I learned not to be half dressed while doing this! I learned how to have everything set out on the bathroom counter. I learned the fastest way to move and tuck the gauze in to keep in in place while I had to work on the other side of the breast for the gauze. I learned that when you go to the bathroom, the gauze in your belly button can suddenly pop out and you have to figure out how badly you need to pee or deal with the gauze.
I learned a lot from cancer and recovery. I was brave to do the wet to dry and determined, but don't let this fool you, I was still depressed. I remember going to my parents' house and saying, "Your house is so clean. I hate my house." I didn't know how to verbalized the feeling, other than with those words.
My mom heard my call and answered my spirits. She came over each day. My 75 year old mom helped me, no scratch that, she didn't help me, she DID the work. All I could do at the point was to point and move then sit, because I was still weak. My mom moved furniture, dusted, cleaned, organized, reorganized, went through each and every room in the house to make it feel more like "home" to me. My house had turned into a trash can after my surgery and I didn't have it in me to take care of it.
Having a messy house only added to depressed Monster Me. It took weeks, but my mom did a spring cleaning of the enter house. I can't explain how much I needed this, how much I appreciated it, how much it lifted the depression. She made me feel more like myself again, because my surroundings were pretty again.
Even though my mom did the work, it was good for my body too. I knew she was coming over, so I would get up. I would walk with her in the rooms. I would attempt to sweep the floors as she moved furniture around. If I could dust, I would. Because she did so much, I also tried to move as much as I could. (In the beginning, I could barely lift my arm to point to things and I had to sit down a lot. By the end I was walking more and participating more.)
We didn't touch Greg's office until after he gave us the green light. This is when a good friend came over and thank goodness she did. There's no way my mom could have moved his desk and the sofa. I think my friend is super woman in disguise. They accomplished a lot in getting things moved and the room looks better than ever. Again, this lifted the depression in waves and waves.
Wet to dry dressing were done, work in the house was done, logging in to the office was also done.
I went back to work at the office during the time that I was still doing wet to dry dressings twice a day. I had to get up extra early to deal with gauze. I was terrified the wounds would bleed and I couldn't control it, but thankfully this didn't happen. I went back to work early, because it was the time when tax forms had to be sent out. My boss was under a lot of pressure for all of her own end of the year duties. Before I went back to the office, I did start working from home. I did billing from home, taking breaks as my body demanded it.
Going to the office that first day to do tax forms was torture. I couldn't reach over. I had to stand up and down, up and down. Did I mention that being cut hip to hip and having nerves removed from the stomach area makes it intensely painful to move? I managed though and felt good about getting the work done. I was back in the office for a couple of weeks and then COVID happened. Not to me, just everywhere.
I received a call from one of the partners in the law firm, "I think you should work from home, because of COVID and your health issues with cancer." I wasn't following the news much, so I was a little surprised, but okay. The law firm acted quickly in getting the employees working at home. It was a mass of confusion to get everything working at home, because the system had to change. Routines were uprooted, the system was crazy. We all managed, but it was not an easy thing.
My husband was also told to stay home and Gregory finished his school year by logging in and listening to pre-recorded messages from his teacher for lessons. He took tests online and submitted work online. Greg and I were both thankful for our jobs. He continued to get paid, even with a cut in pay to cover for the reduction in profits. I was able to work and actually worked more hours from home, so it balanced out.
It was at this point I found out about Outschool. Originally I enrolled Gregory only for art classes. We learned how to do Zoom live classes. This way, Gregory communicated with other kids live time, instead of only prerecorded messages from the teacher. This was a great game changer for him and later helped us all.
In the meantime, gauze, gauze, gauze. That's right. The holes weren't closing up. The wound looked a thousand times better, but it was frustratingly slow to keep doing the gauze changes. The doctor kept saying, "Just do what you're doing." So I did.
After seven months from the first surgery, at one doctor appointment, I told the doctor how I would think the holes were closing up, but then it would bleed like crazy again. He took a stick shape and shoved it into the hole (I felt bruised on the inside for days) and said the scab forms, but then breaks off and it bleeds again. The blood on the stick showed the wound to still be four inches deep. Gauze, gauze and gauze, Keep doing what you're doing.
And kept doing... Until my second surgery was approved. We were in the next stage for COVID, so the office had opened back up by then. I was happy to work in the office and my body was doing pretty good. It was a little weird to go back to the office. Kind of scary, "Who touched that before me? Did someone just cough?" But everything was organized and right where I needed it to be to work. It felt right to be back at the office.
After I was back to work and feeling better, before Gregory went back to school, my dad was seriously ill. He had a bacterial infection, cellulitis. I knew how bad this was, because women have suffered from this after their first and second breast cancer surgeries. I knew it took these women 2-3 weeks in the hospital with a cocktail change of medicine to fight it. I told my mom this. What I didn't realize was how bad the case was for my dad. He had kidney failure, requiring 3 rounds of kidney dialysis. The nurse said the blisters covered his knee to ankle, oozing and gross. The doctor told my mom that he didn't see the light at the end of the tunnel for my dad. We couldn't go see him at the hospital, compliments of COVID. And no, my dad did not have COVID. Prayers from all over came through for my dad. He started to get better, but the minute he got better, the hospital wanted him to go to a nursing home! Mom and I researched the homes, because of the pressure the hospital put on mom to get him moved. Thankfully my sister-in-law is an RN and she told my mom to stall them and demand that he come home instead. Following her advise, this is exactly what happened. Dad is much better now, but that first week back, in a wheelchair and other issues.... mom and I both wondered if the wheel chair would be Dad's new life. Thankfully, that wasn't the case. My parents are strong and amazing.
I think my grandmother understood that my dad was in the hospital. It took almost a month and a half before he was able to visit with her again. Before he was in the hospital, my parents visited my grandmother every weekend. A few weeks after Maw Maw knew my dad was better, she passed away. Dad was there with her, holding her hand, when she went to heaven. It was peaceful. I'm glad my parents were there, as well as Maw Maw's brother. I'm grateful Maw Maw was able to wait for Dad. I think it would have devastated him if she passed away while he was in the hospital. That's a mother's love.
At the same time, my husband and I also did some serious back and forth soul searching. Gregory's school offered two options - in class face to face or virtual learning. My parents were already doing virtual learning for my nephew. After weeks of talking, we finally agreed that virtual was the safest option, not just because of the virus, but also Gregory's allergies and all day mask requirement and my second surgery was scheduled at the time when school would start. It was a rough beginning to virtual, but I'm grateful we made this choice. A week and a half after my second surgery, there was 2 cases of COVID at his school. I would have freaked out if he was in school with COVID cases at my recovery point.
I want to mention at this time that Gregory was tested for GT, as well as GT Art. The testing took place the previous year in the middle his first grade. The results didn't come back until the beginning of the school year for second grade, because COVID delayed the schools being opened to send the results. While in first grade, Gregory was "reading at a sixth grade level" and for math he had to solve as many as possible in 3 minutes. He scored on the High Average range. On the Applied Problems test, "Gregory was able to analyze and solve oral word problems at a fourth grade level." He was accepted into the GT program. At the same time in 1st grade, he was also tested for GT Art. He scored 15 out of 15 on the Art Recognition Test and 27 out of 30 on the Narrative Drawing Test - he was accepted in GT Art as well. He is really enjoying both classes in school this year! Good things happen, even in cancer's chaos.
My second surgery took place on September 16, 2020. The doctor said it would probably take four hours. He said normally the second surgery is all about fixing small things and typically only takes one hour, but he had a lot to fix on my breasts. He said, "Now you have healed enough for me to turn what you have into breasts." See, I'm not crazy, even the doctor knew what I looked like wasn't good.
Prior to the surgery, I had to get typical blood work done. I also had to have a COVID test, because the hospital where I was having the surgery was COVID free.
The nurse at the doctor's office told me, "Your COVID request is sent in, go to such and such a location." It had to be done within so many days of the surgery. I went in as scheduled and there were signs all over the place, "We do not test for COVID unless you are showing symptoms!' What? I'm in the same waiting room with people who HAVE symptom! I'm freaking out at this point and trying not to breath.
The lady at the front desk said, "You don't have symptoms." I had to explain that I needed the test to confirm I didn't have COVID in order to have surgery. I was in the waiting room for 30 minutes. When I was called back, the nurse said, "If at any point you need me to stop the test for a break, just let me know." Why would I need her to stop? She told me to lean my head all the way back where the top of my head touched the back wall. Then she took the swab and stuck it down my nose. My eyes BURNED and tears streamed. She then moved the swab in a continuous circular motion for a while. I felt like screaming! When she took it out, I felt relief, until she put the swab into the other nostril. Are you kidding me!! I cried, from start to finish and that burning feeling behind your eyes - that lasts until the next day.
Thank goodness, I was COVID free.
At a doctor's appointment prior to the second surgery, I made the mistake of calling it cosmetic surgery. Dr. Walter is a plastic surgeon/micro surgeon but he was stern in his reply, "This is NOT a cosmetic surgery. I had to submit pictures of what you looked like prior to the first surgery and pictures of you now. This is corrective surgery from the results of the first surgery."
Because of COVID, nobody could come inside the hospital with me, nobody could wait with me, nobody could pray with me. My husband could only bring me and wait until a nurse came downstairs. She took my temperature and I said good bye to my husband as I walked into the elevator. He said he felt helpless, to not even be able to stay with me, as he was able to do so for the first surgery. I missed him. (Our son was in school during this time, which I'm glad about. He was with my parents and had his mind on school.)
The nurse had a bunch of papers for me to sign, then I had to change into the hospital gown. Dr. Walters came in and marked my body, which didn't take long. When the anesthesiologist came in, he tried to get a vein for the fluid on the top of my hand, on the wrist and on the inside of my elbow. He tried multiple times at each location, to no avail. He said, "We have to put you to sleep first, in order to dig deeper for the fluid vein." Which is what he did... And I don't remember much from that.
The next thing I remember was hearing the nurse telling my husband that I was an independent woman. (I'm wondering what I did or said to deserve that statement, not that I disagree or mind.) Then she said I would probably fall asleep on the car ride home. I think I did. I felt so tired and weak. I hated that feeling. The surgery was only supposed to last for four hours, but it turned in to 6 hours. God bless Dr. Walters and his surgical team. I remember asking my husband and asking the nurse, "Was Dr. Walters happy with the result?" They both said he was very happy. I couldn't see anything yet, but that information gave me a wave of relief.
I'm not going to lie, the first week after the second surgery was as bad as the first week after the first surgery. Just remember that Dr. Walters worked on me as long as he did on the first surgery (Yes, the first was 10 hours, but only half of that was with Dr. Corvette to remove the breasts).
I ended up with two drains coming out, in a bra and in a girdle that went from right under the bra to right above my knees. Yes, there are holes to go to the bathroom, because we had instructions that the girdle stays on for 24/7 for a month.
Greg showed me where the nurse's instructions said to leave the girdle on for showering too. I couldn't take a shower for two days, per instructions. We followed the order, even though I thought I remember Dr. Walters saying I could remove the girdle for the shower.
Well, it was the first time I removed the bra and saw the results. I almost cried. I was black and blue, but the breasts were even and they looked like breasts. I knew he did a lot of work. Including removing the skin (which he had left on the first surgery for blood flow) along the side of the breasts that went under my armpits. But that removal caused him to have to cut and leave stitches from under the breasts, continuing under the arm pit and towards the back. Turning my arms to the side is painful. He also removed the "dog ears" - something that normally happens on the hips after the first surgery - a weird gathering of skin.
Back to the shower. Greg helped me remove the bra and helped me into the shower and pinned the two drains to the shower curtain. I was able to lift my arms, carefully though, and wash my hair (unlike the first surgery). I didn't have a lot to wash body wise, because the girdle was still on.
When I came out of the shower, we used a blow dryer, per instructions, to dry the girdle. Parts of it dried quickly, but there were sections taking forever. Then I saw blood appearing on the side of the girdle. I called out to Greg. The girdle has zippers on either side, along with eye hooks along the side of the body. He undid the zipper and the eye hooks right by the blood. He removed a gauze.
We dried the area as best as possible and then put a dry gauze back on and hooked up the girdle from that one spot he opened. Turns out, there were four other gauzes that he ended up removing. What a shower ordeal! The next day, the doctor said it was okay to get out of the girdle for the shower.
Getting out is good, getting back IN.... Oh my gosh, I thought I was going to pass out, because Greg had to push my body along the side and two places had stitches. Plus, he did one side, then the other and the girdle was "off center." This makes not for a fun time when nature calls. I remembered a fellow pink sister writing to me and saying, "It's easier to leave the legs of the girdle eye hooked and zipped. When you get out of the girdle, step out of the legs, so the legs are there when you get back into it, then eye hook and zip a little at a time on each side to keep it even." We did that and it worked.
A week after the second surgery, the doctor removed the drains. That made me feel more normal. The girdle was in place to make sure I didn't have another seroma. As the doctor explained to me, "The body produces fluids during recovery. Fluid is also pumped into the body to lift the skin from the body, in order to have the surgery. This leaves a gap, which can leave pockets of fluid, aka, seroma, to form. A compression garment applies even pressure, preventing excessive fluid buildup and helps your body absorb any fluid that accumulates from the surgery." The doctor said I still had to keep it on a for a month and after that I have to wear spanx for another month, because the body is still swollen from surgery. (I'm going to add here, I recently heard from a fellow pink sister who had her first surgery the same week that I had my first surgery... she just now has developed a large seroma and will require surgery to remove it. So, go girdle!)
Now here's a reality check. Girdles hurt. The stitching from under the breast going under the underarms and to the back are where the bra ends and where the girdle begins. It hurts. A lot. The weakness is real. The limitations of lifting is there, along with the weakness of writing again. Stiffness and pain of movement, needing help in and out of a car.... Having drains was a pain AND at the same time.. Aunt Flo came to town. Are you kidding me, body? Really, but I hear from other women that they get their cycles right after surgery. Dealing with this AND a girdle, not fun.
At two and a half weeks after the second surgery, I shared on the online Double Mastectomy/DEIP group. Women have shared their "Phase 2" surgeries. I hesitated to do so, but I showed the results from the first surgery, my healed body from the first surgery and the results from the day after the second surgery. I'm glad I shared my experience and results.
One lady had a bunch of questions for me, especially when she read that I had necrosis. She asked me to share pictures. I didn't have many, because back then I refused to take any pictures, but I did have some toward the end of the necrosis. I posted the pictures. She was so relieved, encouraged, thankful and felt hopeful. She told me that she was currently dealing with a very similar situation and it was so depressing. She said my post gave her hope. That made me feel good, that was the reason I posted to begin with.
Another woman replied with, "you are beautifully bruised." It will take a while for the bruising to go away, but she is right. Another woman posted, "Wow! You are the poster child for when people post that it will look better after Phase 2 surgery!" I received so many compliments and encouragement and questions. I was happy to answer everyone, because if I could help another woman through this journey, I want to do so.
As for the healing of Phase 2 surgery, it's not nearly as bad as the first one, other than the first week. Keep in mind, this was not a one hour typical Phase 2 surgery. Some women are only in for one hour and their recover is a lot quicker. My doctor told me to expect the recovery to take 6 weeks and a full recovery to be 4-5 months. This was said after the drains were removed. He told me not to strain my body, not to lift anything, no driving, strict orders to relax and walk when I can to keep the blood flowing, which is needed after surgery. I was also given a gel to put on the areas that had stitches - which included: the lollipop stitch for the nipple area, under the breast continued to the back and both hips. The doctor said ONLY to put the gel on the areas. He said, "At the end of October, when those areas are red and puffed up, I'll give you instructions on how to massage them to decrease scarring." The doctor added, "After 4-5 months, we can talk about nipple reconstructions or tattoos." I said, "Right now, I don't want another surgery. Tattoos will be fine." He replied, "We'll talk about it in 4-5 months."
I'm being a good patient. Mostly because my body is in charge. At times I think, "Hey, I'm feeling good." I'm not lifting or doing much, but I'm feeling better. Then all of a sudden, I feel like you do with the flu, that horrible weakness. For example, I was doing good one day, went for a walk outside, just a few houses down and back. When I came back in, I thought, "Okay, I'm going to rest on the chair for a few minutes." I fell asleep! For 2 hours! I woke up disoriented, not knowing the day or time of day. I didn't think I would sleep like that when I sat down in the chair, but my body was that exhausted.
As of right now, I'm just in the beginning of my recovery. It's not easy, not after that type of second surgery. I am happy though. Even with the frustrations of recovery and limitations and drains and girdle... I'm happy. I feel whole again, female again.
I'm going to post pictures, but just be warned - it's not something pretty. It's real. It was painful as it looks, but if you are going through this or someone you know is, maybe my journey will help, give encouragement. Just think... a year ago, I found out I had breast cancer. I just turned 50 before the first surgery happened. It was a long healing process... I'm about to celebrate another birthday. I'm grateful to be here to do so. I'm in a much better place, emotionally and physically, even though I'm in the beginning of recovery for the second surgery. Things DO get better. Hold on to hope, ask for help and pray.
Let's start with a sweet picture - my son
Update: I did have healing issues from the second surgery. I was so frustrated by the setback. I was back to wet-to-dry gauzes again. A pain, but nothing in comparison to the first surgery complications. It took almost 4 months to heal for the wound openings, but they did heal. If you are going through this journey, never give up. Just breath. Each day accept it as a gift.
Pink sisters - when your skin changes colors - immediately take pictures, monitor it, don't take it lightly or "wish it away." Keep your doctor informed and insist on an appointment if you have to!
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